Dementia’s impact on those who care

Old man

By Alan Gillies

Recent research has suggested that the rate of growth in the prevalence of dementia may be levelling out as the general health of the population increases. While such findings are encouraging, commentators have pointed out that increasing rates of obesity and diabetes, as well as the fact that people are living longer, means they have to be treated with caution.

Whether we face a continuing increase, a stabilisation or a decline in dementia, for those who are affected it will continue to have a devastating impact. And this includes not just the person with dementia, but also their loved ones and those who care for them.

A recent enquiry to our Ask a Researcher service asked for our help on this very question. As a social worker needing to understand the broader impacts of the disease on the family in order to be to provide appropriate help and support, the enquirer came to us looking for the available research evidence on the impacts of dementia on those caring for them. Our researcher was able to provide a comprehensive roundup of the current literature, highlighting the variety of issues facing carers of those with dementia.

Carers’ working lives

Not all the issues covered were ones that might be immediately obvious, like the practicalities of caring and the emotional impact of seeing a loved one affected. For example, one piece of research we were able to flag up examined the impact on carers’ working lives and workplace relationships.

Over half of respondents to a survey (53%) said that their work had been negatively affected due to their caring responsibilities. The survey highlighted the pressure on those in the prime of their working life, most often women, who are combining care for an older relative, often at a distance, with a range of other family responsibilities.

Minority ethnic carers

We also highlighted research on the way dementia can affect different sectors of the population. One recent study we identified, examined how the migration experiences and life histories of Sikhs living in Wolverhampton impacted on their experiences of caring for a family member with dementia and the barriers to accessing services.

It found that, rather than cultural differences, it was migrants’ experiences and perceptions of social exclusion, their perceived and actual social position as migrants, that affected the ways in which they accessed services.

Communicating with family members who have dementia

As well as drawing together a range of research on carers’ experiences and difficulties, we were able to include examples of initiatives, such as Talking Mats, which can help to improve the experience of caring for a loved one with dementia.

Talking Mats are a simple communication tool, developed at the University of Stirling, to help people with communication difficulties to express their views. It uses a simple system of picture symbols that allow people to indicate their feelings about various options relating to a topic.

Research for the Joseph Rowntree Foundation looked at their use for people with dementia and their family carers. It found that, unexpectedly, although the people with dementia and the family carers both felt more involved in discussions using Talking Mats, the increased feeling of involvement was significantly higher for the carers. Carers repeatedly reported feeling ‘listened to’ by the person with dementia and felt that their loved one could actually ‘see’ their point of view. It found that many family carers said they often choose not to say something that is going to inflame a situation, so instead they say nothing at all. Whereas the Talking Mats tool allowed them time and space to have their say, and helped to organise and structure their conversation with the person with dementia for whom they cared.

Our response to the enquiry provided our member with a speedy and concise roundup of the currently available literature on the issues and difficulties facing those who provide vital care for people with dementia.


Our popular Ask a Researcher enquiry service is one aspect of the Idox Information Service, which we provide to members in organisations across the UK to keep them informed on the latest research and evidence on public and social policy issues. To find out more on how to become a member, get in touch.

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Social labs … tackling social problems through collaboration and design

Crossing out problems and writing solutions on a blackboard.

by Laura Dobie

Nesta’s LabWorks 2015 global lab gathering kicks off today in London, bringing together innovation labs, units, offices and teams working within and with government to address social challenges.

Today on the blog we look at social labs, their potential to improve public services and a couple of social labs who are carrying out innovative work in public services.

What are social labs?

Social labs are platforms for tackling complex social challenges.

Zaid Hassan highlights the following key characteristics of social labs:

  • They are social, facilitating participation by a broad range of stakeholders
  • They are experimental, taking an iterative approach to problem-solving
  • They are systemic, seeking to address the root cause of a problem, and not just its symptoms (Hassan, 2014, p.3)

Social labs draw inspiration from design thinking, which is centred on the following principles of design which were promoted by design firm IDEO:

  • A user-centred approach to problem solving
  • Using direct observation as a main source of learning
  • Moving quickly to creating prototypes as a means of generating additional knowledge
  • Learning from failures to refine and redevelop

Social labs in the public sector

The public sector is making increasing use of design, policy or social labs as a means of complementing and reinforcing skills in public policy, programme and service design. They contribute a different perspective to challenges and use a range of research methods and facilitation techniques to foster ideas and insights that attempt to incorporate many different points of view.

Recent Canadian research on a What Works Lab, which was established to develop approaches to increase employer engagement in workplace training, found that using lab methodology enhances the ability to generate insights into potential policy responses, and that lab techniques can also substantially reduce the transmission cycle between research, policy and service delivery. The research also highlighted how experimentation in a lab setting can be used to de-risk an initiative before wider implementation, and demonstrated that labs are an effective means of generating high-quality policy work.

Social Innovation Lab Kent (SILK)

SILK is a small team based within Kent County Council established in 2007 to ‘do policy differently’. They consider that the best solutions come from people who are at the heart of an issue, those with lived experience, families, friends, volunteers, and front line workers, and they ensure that these groups are involved at all stages their projects.

Projects are broken down into the following phases:

  • Initiate. Involve the right people, create a project plan collectively and decide who needs to be informed about the project.
  • Create. Collect as many insights as possible, involve a broad range of stakeholders and generate ideas for testing in the next phase.
  • Test. Test the ideas which were proposed during the create phase, and continue testing until a model that woks is identified. Trial runs, prototypes or ‘mock ups’ can be a part of this process.
  • Define. A model which has been tested and known to work is defined and consolidated.

SILK has delivered a variety of projects across the themes of future services, service (re)design and sustainable services, and tackled a range of social issues, including accessible and affordable food, the resettlement of offenders and creating a dementia-friendly community.

MindLab

Based in Danish central government, MindLab employs a human-centred design approach to address public sector challenges. Its board sets its strategic direction and approves its portfolio of projects, ensuring that their work is aligned with their sponsors’ priorities. Its emphasis on human-centred design helps to forge links between the perspectives of end users and government decision making.

MindLab’s team has a variety of skills which are indicative of its ethos and method, including social research, design, public administration, project management, organisational development and creative facilitation.

In one project MindLab worked with National Board of Industrial Injuries (ASK) to increase the number of people who remain in employment after suffering an injury at work. MindLab highlighted the potential in strategic working across working across public, private and non-governmental organisations and a change in attitude in helping these people return to the labour market.

MindLab interviewed people who had suffered industrial injuries and put together service journeys, which mapped the different stakeholders involved in a work injury case from a citizen’s perspective. They demonstrated through a case study how cooperation between the municipality, the insurance company and ASK improved an injured person’s employment prospects. MindLab also conducted internal workshops with ASK management to support a change in strategic focus from case resolution to employment outcomes for injured people.

It is clear that social labs are taking a different approach to policy and service delivery, focusing on the experiences and needs of service users to devise innovative solutions to a range of social challenges.


The Idox Information Service can give you access to a wealth of information on economic and social policy and public service delivery. To find out more on how to become a member, contact us.

Further reading

Hassan, Zaid (2014). The social revolution: a new approach to solving out most complex challenges. San Francisco: Berrett-Koehler Publishers, Inc. (Available for loan from the Idox Information Service Library)

The What Works Lab process: report for the Skills and Employment Branch, Employment and Social Development Canada

World Alzheimer’s Day: can we reduce dementia risk?

Older woman with Alzheimer's in a chair

Image courtesy of Flickr user Vince Alongi using a Creative Commons license

By Steven McGinty

On the 21st September, Alzheimer’s organisations across the world will be carrying out events to raise awareness about Alzheimer’s and dementia. The event, a key part of World Alzheimer’s Month, was launched by Alzheimer’s Disease International (ADI) in 1994, with the aim of highlighting the tremendous work carried out by Alzheimer’s organisations.

Each year, a new theme is selected for World Alzheimer’s Month, and this year the focus will be on how we can reduce the risks of developing Alzheimer’s and dementia. In support of this event, I’ve decided to look at some of the statistics on dementia, as well as review the latest evidence on reducing the risks.

Continue reading

How should we address loneliness and social isolation among older people?

For elderly men sitting on a bench

Image courtesy of http://goo.gl/A8ykMA using a Creative Commons licence.

By Steven McGinty

“Loneliness and the feeling of being unwanted, is the most terrible poverty“– Mother Teresa

Yet, for many older people, loneliness and social isolation are the normal state of affairs. A recent study by the Office for National Statistics (ONS) found that 34% of people aged 52 and over felt lonely often or sometimes, with this figure reaching 46% for people aged 80 or over. Rather worryingly, a report by Age UK also suggested that over half of older people consider the television as their main source of company.

In many respects, these figures may not be too surprising, with some arguing that this is simply the by-product of changing societal attitudes. Conversely, it could also be said that these changes are a response to the demands of busy modern life. For example, a report published by the Royal Voluntary Service highlights that, because of uncertainty in the job market, many children have to move away from their parents for work reasons. The impact of this is that many older people are seeing their families less and less, with 48% of parents only seeing their children once every two to six months. Continue reading

Dementia – the new normal?

elderly woman reading to children

by Alan Gillies

A report published last week by dementia care specialists Red & Yellow Care, in association with the Alzheimer’s Society, argues that the stigma attached to dementia is getting in the way of people with the condition living their lives, as they are “deflated by the ‘nothing can be done’ attitudes of hopelessness that pervade not just public, but some professional attitudes”. Continue reading